USAID Program for Accelerated Control of TB in Karamoja

SUCCESS STORIES DISCLAIMER: USAID PACT-Karamoja made possible by the generous support of the American people through the United States Agency for International Development (USAID). The contents of this storybook are the responsibility of IDI and do not necessarily reflect the views of USAID or the United States Government. About PACT-Karamoja Where We Work

Period: 2020 - 2025 Funder

Project Goal Scale-up evidence-based and high-impact interventions towards the achievement of End TB strategy targets of 90% treatment coverage and treatment success through health system strengthening in all districts of the Karamoja sub-region. Project Objectives Improve treatment success rates to 90% Improve case detection rates to 85% Improve cure rates to at least 70%

Our Partners The USAID Program for Accelerated Control of TB in Karamoja (PACT Karamoja) is implemented by the Infectious Diseases Institute Ltd (IDI) with its partner: Dr. Achar, District Health Officer receiving one of motor bikes donated by the Project from Chief of Party, USAID PACT-Karamoja.

USAID Support Improved TB Patient Tracking Among Nomadic Populations in Karamoja Sub-region Ruto, however, did not give up on finding Margaret. He continued to check if Margaret had returned to her home whenever he visited other TB patients in Kukayim village for adherence support. He also regularly called her next of kin to find out if Margaret had returned from Ochorichor village. After five months of tracking Margaret, Ruto found her back at her home unwell. He encouraged her to return to Amudat hospital for review by the health workers. Margaret is one of the 350 TB patients and more who have been successfully traced by USAID Program for Accelerated Control of TB in Karamoja (PACT Karamoja)’s community teams after failing to keep their monthly clinic appointments. Ruto attributes their success in tracking the patients to teamwork and persistence. “We did not give up the first time when we failed to find her. We continued looking for her.” Ruto says. However, he is also quick to appreciate the enabling support given by the USAID PACT Karamoja activity which facilitates his work. “It is also good that the project provided phones in the TB clinic and airtime. We had to make many phone calls to find Margaret”. In December 2019, 68-year old Aleper Margaret Chepotee from Kukayim village, Ruto in Amudat town was diagnosed with tuberculosis (TB) at Amudat Hospital. Margaret has since restarted her TB treatment and is ready to adhere to the Margaret was immediately started on TB treatment which she dutifully adhered to entire six months of therapy. Ruto continues to provide treatment for the first two months of treatment. But later, she started missing her clinic adherence support since he comes from the same village. Margaret appointments. Realizing that Margaret had missed two clinic visits, the community received health education about TB and now understands that the disease linkage facilitator from Amudat hospital Mr. Ruto Joseph on conducted a home will take six months to cure. She is also happy that Ruto brings her TB visit in an attempt to trace her. medicines at home since Amudat hospital is far. On arrival at her home, he was told that Margaret had traveled to Ochorichor, a “I am happy Ruto brings my medicine all the way up to my home. He also different village 28 kilometers from her home to take care of a sick relative and taught me that stopping to take the medicine was not good. I feel much did not have telephone contact. Efforts to trace her in Ochorichor through the better today after restarting treatment. I will continue on the treatment for community-owned resource person (CORP) overseeing that village was not six months. I will inform Ruto if I have to go away on any other journey”. successful and therefore declared lost to follow up in May 2020. Margaret said

USAID - PACT KARAMOJA SUCCESS STORIES Door-to-Door TB screening by Community Owned Resource Persons (CORPs) in Kapakook central village, Kotido district. USAID-PACT Karamoja Collaborating with Community-Owned Resource Persons to Provide TB Services

“I suffered with cough, body weakness and joint pain for a while and I thought it was malaria. I only confirmed that I had TB after going for screening” Gabriel Kubal, a resident of Lokodope village in narrated. Several people with tuberculosis (TB) in Karamoja do not know that they have the disease. National TB statistics indicate that over 89,000 Ugandans get infected with tuberculosis every year, surpassing the 50,000 who contract HIV annually. With support from the American people, the United States Agency for International Development (USAID) partnered with Infectious Diseases Institute (IDI) in the USAID PACT Karamoja Activity to build local initiatives towards the reduction of the TB burden in the Karamoja region. Karamoja region is one of the three areas in Uganda cited with a very high rate of TB spread. The region covers 9 districts that is Abim, Amudat, Kaabong, Karenga, Kotido, Moroto, Nabilatuk, Nakapiripirit and Napak. Due to the nomadic way of life of the people in this region, it is difficult to treat and follow up on TB patients as they move from one area to another, taking care of their livestock. As a result, this has led to an increase in spread of TB and a low rate of adherence to medication for people that were diagnosed with TB as well as an increase in the rate of spread of TB within the communities.

In an effort to address these challenges, the USAID PACT Karamoja is working with community-owned resource persons (CORPs) who were introduced at the start of the project, to provide TB screening services in high-burden parishes, support referrals from communities to the facilities and work with community leadership to support those on treatment to adhere to their medication. Like many others, Gabriel was identified through active door-to-door screening by a CORP and then referred to the nearby facility where he was diagnosed with TB. Over the last four months, the CORPs in the region have screened over 13,000 people in the communities. They have also encouraged many more to go for TB screening, taught community members the signs and symptoms of the disease as well as ways of supporting the sick people within the communities. “There are many people within the villages that have been referred by their “I am grateful for the support I have received. Lucy encouraged me to go for family and friends with symptoms of TB. Some are able to go to health TB screening at the health centre. I am currently in my third month of centres for treatment however, others are afraid. They require treatment and I hope to continue with my medication as required.” Gabriel encouragement to get screened and treated if diagnosed,” says. He is one of the TB patients currently on treatment at Karenga HCIV enrolled through the CORPs. Lolem Lucy, a CORP working with Karenga HC IV reaching out to people with symptoms of TB or anyone referred within the villages

USAID - PACT KARAMOJA SUCCESS STORIES Beneficiary receiving a follow-up call from a health worker. CallforLife Digital Application Motivates TB Patients in Karamoja sub-region to take medicine regularly

Isiro Peter is a 61-year-old retired civil servant from . For the past TB patients also use this digital intervention to submit a symptom alert three years, Peter has been receiving care for chronic renal disease at Matany to the health worker at the registering facility for any medicine side hospital. In August 2020, Peter developed a cough with chest pain and some effect experienced. Trained healthcare workers provide advice on difficulty in breathing. He reported these symptoms to his local health facility in symptom management or return to the health facilities if warranted. Amuria district from where he was referred to Matany Hospital on suspicion that “Being enrolled onto the CallforLife® digital platform was the beginning he had contracted the dreaded COVID-19 disease. of a new life for me,” says Peter. He relies on the CallforLife service as one would on a friend. His wife and children know the call time, which is “I was in bad shape. I was admitted as a COVID-19 suspect and placed in the 9pm every night. They prepare his dinner early and remind him to eat isolation unit. After a week, I was informed that I did not have COVID-19 but before call time. My wife often says to me, “Eat your food fast, your instead had TB. I was surprised because I never expected to have TB. I was “friend” is about to call.” started on TB treatment and discharged two weeks later. I continued to take my medicine from home but with a lot of difficulties. I thought the drugs would kill Before CallforLife, Peter felt that the TB medicines were harming his me”. body but healthcare workers on the CallforLife service have reassured him about the safety of these medicines and encouraged him to adhere A month later, amidst his fears about TB treatment, he received a telephone call to all his medicines. Peter has never missed a single dose of his TB from an officer who introduced himself as Patrick. medicines. “Patrick invited me to be enrolled on a digital platform known as CallforLife®, which would provide me with education messages about TB, answer any ‘Whenever I receive advice through the call, it makes me strong and questions about medicine side effects, and remind me to take my medicine on motivates me to take my medicine. I have been advised to test my family time.” members and none of them has developed TB symptoms. CallforLife® reminds me of my appointment date at the hospital even when I am CallforLife®(CFL), is a digital adherence support intervention being piloted by the about to forget.’. USAID Program for Accelerated Control of TB in Karamoja (PACT Karamoja) in Matany hospital and four other high-volume primary health care facilities in Peter introduced CFL to other TB patients at Matany who appreciate Moroto and Napak districts. Since September 2020, 104 TB patients have the new service. He says CFL is good for everyone. received daily medication reminders, weekly health education messages and ‘I am grateful and pray this support continues until I complete my monthly clinic appointment reminders. Messages are sent at the patients’ treatment. I feel motivated to battle two diseases. They asked me many preferred time and in their language of choice. The system also offers support for questions at first, I felt they were handling me like a baby.’ the callers symptom management. have become my friends. Today I am happy to have met the unknown caller finally’,

USAID - PACT KARAMOJA SUCCESS STORIES USAID PACT-Karamoja TB Officer supporting mentorship on documentation in Wilela HC II, . Post-training Mentoring Of Health Workers Improves Health Facility Weekly Epidemiological Surveillance Reporting On Tb In Karamoja Region

In Uganda’s Karamoja region, district health teams ensure that all health facilities submit weekly epidemiological surveillance reports to the Ministry of Health using an SMS-based platform called MTRAC. This report provides an update on a number of notifiable diseases, including TB testing and treatment. In November 2019, Uganda’s Minister of Health declared TB a national public health emergency calling on district leaders and partners to mount a national emergency response targeting three that included Karamoja. In March 2020, USAID local partner PACT Karamoja engaged district biostatisticians to review their district performance in the submission of weekly surveillance data on TB, with the aim of identifying critical gaps and priority actions to address them.

Despite Karamoja being a high TB burden region, TB updates were missing in many of the weekly surveillance reports submitted by health facilities. In May 2020, following the partial easing of COVID-19 national guidelines to allow continuity of critical health services, the USAID PACT Karamoja team, along with the district TB/Leprosy supervisors and biostatisticians, carried out post-training mentorship visits to all facilities in the region, with the aim of improving the compilation and submission of accurate weekly surveillance reports using phones while observing national COVID-19 infection prevention and control measures.

These efforts have closed the gap and resulted in a substantial increase in the number of reports including TB data to allow for better performance monitoring and program improvements.

USAID - PACT KARAMOJA SUCCESS STORIES USAID PACT Karamoja Lab systems officer conducting mentorship on Microscopy utilization and Laboratory logistics ordering at St. Pius Kidepo HC III. SMS Reminder Messages Reduce TB Medicines Stockouts In The Karamoja Sub-region Karamoja, a region in northeastern Uganda, has the highest incidence rate of TB in the country. A third of the TB cases reported in Karamoja are children below 15 years of age, which is significantly higher than the national average of 12%. Stock-outs of TB commodities, especially pediatric TB medicines, used to be one of the key medical challenges in Karamoja, and less than half of the facilities managing TB patients in the sub-region were ordering TB commodities or orders were irregular and inaccurate. “I don’t know how the project (USAID PACT Karamoja) is going to help us. We have frequent stock- outs of TB medicines in the region especially for the children.” Dr. Lemukol James ( Health Officer during the regional project inception meeting). To overcome this problem, the USAID Program for Accelerated Control of TB in Karamoja (PACT Karamoja) Activity that started in January 2020 initially trained all medicines management supervisors, district TB/Leprosy supervisors, district logistics focal persons and biostatisticians in the use of the national TB web-based ordering system (TWOS) to order and report on available TB commodities from all health facilities in Karamoja. Mentors and health facility logisticians were also oriented on how to prepare accurate orders and report on TB commodities.

In addition, the project continues to facilitate district mentors to conduct regular mentorship visits to health facilities, sends out reminder messages encouraging facility teams to submit their TB medicines orders in time, supports redistribution of commodities within the sub-region and placement of emergency orders in case of non- fulfilment of orders earlier made. “Infectious Diseases Institute sends us reminder messages. These messages are good because they keep coming until you act. Keep those messages coming.”Mr. Achila Christopher, District TB/Leprosy Supervisor, Nabilatuk. The region has maintained 100% ordering and reporting rates for the last four National Medical Stores bimonthly cycles since July 2020. The number of TB medicines redistributions within and across districts in the sub-region have also tremendously reduced since majority of the facilities have adequate quantities. “In the most recent past before USAID PACT Karamoja, we had to go as far as Kotido and Kaabong districts to look for TB medicines. TB medicines and commodities is not an issue any more in my district,”said Dr. Peter Lokwang, Health Officer.

USAID - PACT KARAMOJA SUCCESS STORIES Delivery of samples from a targeted TB screening activity held at Aywee Village for GeneXpert testing at Abim hospital. Finding TB Cases In Uganda’s Karamoja Region

In 2019, Uganda’s Ministry of Health declared the Karamoja region, with an estimated population of 1.2 million, to have one of the highest TB burdens in Uganda. Within the region, the Ministry of Health approximated that five of every 10 TB patients complete treatment successfully, and only three in 10 are cured. In January 2020, the Programme for Accelerated Control of Tuberculosis (PACT) Karamoja project, implemented by USAID local partner the Infectious Diseases Institute, was launched to close this gap and assist in getting services closer to the people most in need of them. Through the project, people without formal medical training, known as community-owned resource persons, are able to help identify TB patients in the communities, collect sputum samples for testing, and assist in linking TB patients who have stopped taking their medication back to care. “Many people here think having TB automatically means you have AIDS,” says Joseph Aburah, a community- owned resource person trained through the project. “This is a myth we are working hard to dispel, and it helps that I have the health center staff to teach me these things so that I can help my brothers and sisters.” One of the people helped by the project is Lokoru Lepatabo, the watchman at Tapac Health Centre III.

Lokoru comes to work every day and sits under a tree a few meters away from the wired fence and gate that leads to the in- patient wards. Lokoru is just over six feet with a robust physique, uncharacteristic of his sixty years. He was able to work during the last stages of treatment for TB. Tapac Health Centre III serves a resource-poor community in Karamoja that is dominated by the Tepeth, a tribe where many work in strenuous marble mining. With barely any means of transportation, the people in the communities surrounding Tapac walk tens of kilometers to get to health centers and to access basic services. Lokoru’s illness was discovered after his three children were identified and tested positive for TB during a door-to-door testing exercise by PACT-trained village health teams. After his entire family was tested, he was found to be the only other family member with a TB diagnosis. His children have since recovered. “I looked terrible in the beginning,” Lokoru said. “I had lost a lot of weight and was extremely weak. I had trouble coming to work and thought maybe it was just old age. Even the medication initially made me weak, but I would not be here if I had not persisted.” With support from community owned resource persons, Lokoru completed his treatment in August.

USAID - PACT KARAMOJA SUCCESS STORIES Chief of Party, USAID PACT Karamoja making entrance into a “Manyatta” in Pajar Village, during a community visit to project beneficiaries. Chief Administrative Officer (4th Left), receiving a donation of laptop computers, desk phones, active TB screening stamps and MIFI from Chief of Party, USAID PACT Karamoja in presence of DHO, DTLS, NTLP Representative and health worker from St. Pius Kidepo HCIII USAID - PACT KARAMOJA SUCCESS STORIES OUR CONTACTS

Infectious Diseases Institute Dr. Mary G. Nabukenya Mudiope College of Health Sciences, Makerere University Chief of Party, USAID PACT-Karamoja P.O. Box 22418 | | Uganda Plot 1, Lomilo close, Nakapelimen, Moroto Mobile: +256- (0)31-2211422 +256-(0) 770-502-837 | (0)772-926-953 [email protected] [email protected] www.idi.ac.ug USAID Program for Accelerated Control of TB in Karamoja